Take part in research
Our vision is a world without motor neuron disease (MND) and for decades we’ve been investing in cutting-edge research to help ‘make time count’ against MND.
The largest clinical trial in UK history
We are a key funder of MND-SMART, having invested £1.5 million in 2018 to establishing this ground-breaking clinical drug trial, which aims to find treatments that can slow, stop or reverse progression of motor neuron disease. We have now committed a further £2 million to make sure the trial can continue to run until 2028.
The UK-wide trial has been made possible by our generous supporters. Its design allows multiple drug treatments to be tested at the same time, speeding up the process and reducing the number of people with MND who would be assigned to the ‘placebo’ group.
It has started with ‘repurposed’ drugs which are already approved and on the market for use in other conditions. This means all the safety testing and development work has been done, saving time and money. MND-SMART is designed to run continuously for years to come.
As of January 2024, there are more than 800 participants taking part across 23 sites around the UK.
Your views matter
The views and opinions of people living with MND are at the heart of our work. We are incorporating the lived experiences of people affected by MND, gathered through our surveys, to inform this work.
If you would like to get in touch with us about our funded research, please contact research@mndscotland.org.uk.
Other ways to get involved
Care-MND
There are several research projects involving people with MND taking place in Scotland at any given time. If you are interested in participating, you can register your interest on the CARE-MND platform and discuss this with your MND Nurse Specialist.
Opportunities to get involved
The University of Newcastle – Motor Unit MRI (MUMRI) scanning of people with MND
Study title
Diagnosis and monitoring of Motor Neuron Disease using motor unit MRI (MUMRI).
Aim of the research
Improve the understanding of the impact of MND on muscles to work towards developing new diagnostic and monitoring methods.
What does it involve?
Undergoing 4 MRI scans, at 6-month intervals, during which you’ll will be asked to tap your foot in time with beeps played through headphones. Each visit will last around 2 hours, with the scan taking between approximately 30 mins to 1 hour.
Where is it taking place?
Newcastle Magnetic Resonance Centre, Campus of Ageing and Vitality, Newcastle. Travel expenses for the participant and any accompanying carer will be covered by the researchers.
Who can take part?
- Adults aged 20-80 diagnosed with MND.
- Participants must be able to safely undergo MRI scanning (the radiographers at the centre will conduct a full safety assessment before you enter the scanner, but if you have any questions about this please get in touch before travelling).
Where can I find out more?
To find out more or express interest in taking part please contact Dr Ao Wang at Ao.Wang@Newcastle.ac.uk, or on 07835 146031.
The University of Glasgow – Optimising 7 Tesla MRI scanning protocol
Study Title
7T Imaging in Patients with MND to identify Non-Invasive Disease Biomarkers for Disease and Genetic Subtypes.
Aim of the research
The overall aim of the research is to investigate using high powered MRI scanners as a potential diagnostic tool for MND. This specific involvement opportunity is about ensuring the MRI protocol is optimised, by scanning people who do not have MND, before people with MND are invited to take part in the next stage of the research.
What does it involve?
Undergoing an MRI scan in the 7 Tesla MRI scanner. The scan will usually take between 30 mins and 2 hours depending on the protocol being tested and the area being scanned.
Where is it taking place?
The Queen Elizabeth University Hospital, Glasgow. The scans will usually take place during working hours.
Who can take part?
People between the ages of 16 and 80 years old who are in good health.
Where can I find out more?
More information can be found here, or you can contact the Clinical Research Imaging Facility either via email at ggc.researchimagingvolunteers@nhs.scot, or by calling 0141 451 6802.
Sheffield Institute of Translational Neuroscience (SITraN) – interviews of people with changes in C9orf72 or SOD1 gene
Study title
The Role of Exercise in Modifying Neurodegeneration Related to Motor Neurone Disease.
Aim of the research
To better understand different risk factors that lead to people developing MND.
What does it involve?
Taking part in a one-off virtual interview with questions about your lifestyle at different times throughout your life. The interview will last around 1.5 – 2 hours.
Where is it taking place?
Interviews are carried out online.
Who can take part?
- People with MND who have a change in the C9orf72 gene(C9-MND) or SOD1 gene (SOD1-MND).
- Family members of people with MND who have a change in the C9orf72 or SOD1 gene but are unaffected by MND.
- The study is unfortunately not suitable for those with cognitive impairment or frontotemporal dementia (FTD), or people under 18 years of age.
Where can I find out more?
To find out more or express interest in taking part please send an email to Dr Gergo Erdi Krausz at g.erdi-krausz@sheffield.ac.uk.
Clinical trials happening throughout the UK
There are a number of MND clinical trials taking place in the UK at any one time. Some of them are small and regionally located, which means they often only accept people who are local to the clinic running the trial. Some are UK-wide and have recruitments centres in Scotland. Each trial will have its own eligibility requirements.
MND-SMART
This is run by the University of Edinburgh, it is a platform trial that will test a number of different drugs. It is UK wide and available to most people with MND in Scotland.
Lighthouse II trial
This trial is run by King’s College London which is testing an antiviral drug. There is now a recruitment centre in Edinburgh. Recruitment is scheduled to end in Spring 2024.
UK MND Clinical Studies Group
A website that lists all the MND clinical trials currently recruiting in the UK. Here you will find information about recruitment centres and the eligibility requirements for each trial. Please be aware that you may not be able to access many of these trials because of geographical location or eligibility requirements.
For researchers
Are you an MND researcher? You can help us create a world without MND and improve the lives of those living with the illness today.
Find out more about our funding applications and how you can help make time count.
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